How Soon did you learn what type of MS you have?

I'm curious about the types of MS and how soon you learned what you had. Since I am newly diagnosed, I've learned a lot in here (thank you!). I'm going to ask my doctor about the two different types of MRI's that can determine how long you have had MS, etc.. and also ask how they determine which type of MS a person has. I know my bloodwork is still screwy, and he's going to order another MRI tomorrow to determine the lesion activity since March, but how soon did you find out what type of MS you have had, and how did they come to that determination?

Hi Kaz :) Sorry about your dx (diagnoses)I was unaware that they could actually determine how long you had MS by MRI?? There are, however, 2 different machines, one being the 1.5 Tesla, and the 3.0. In a study by the Department of Neurology, Division of Brain Mapping, University of California Los
Angeles, Los Angeles, CA, USA, &quot;the 3.0 T scans showed a 21% increase in the number of detected contrast enhancing lesions, a 30% increase in enhancing lesion volume and a 10% increase in total lesion volum&quot; yet there are not a whole lot of these around.

About 85% of people will be dx'ed with RRMS, and only 10% with PPMS.

RRMS eventually turns into SPMS within approx 10-15 years, but NOT always!

Most Neurologists will not dx you with &quot;definate MS&quot; until a susequent relapse occurs, even if you have all the signs. You may get either a &quot;possible&quot; or &quot;probable&quot; until that time. Not many people even know this.

In 1993 I went paralysed on my entire left side, had a HUGE (2.5)lesion (there are usually in MM's),a few smaller ones,and a positive LP, ALL pointed towards MS of course, but did not get a &quot;definate&quot; dx until my next relapse. Mostly to determine if it is RR or PP. PPMS you only get at onset and continue to progress without relapse occurance.

I am now SPMS and that is due to the fact that I am progressing, yet without relapses, although I can still have relapses. Does that make sense?! Lol

I hope your lesions activity is none! and glad you made your way here, this place is great. I am new here as well, so I look forward to talking to you more!

Hi! I was never told outright which type of MS I was diagnosed with. I only saw it on my medical reports and Rx. When I inquired about how they would gauge my progression, if I'm heading towards more progressive types of MS to my now-fired neuro, the Prince of Darkness, he told me that they'd know if I kept having attacks over a course of time. I won't get another MRI to watch my lesions unless I have some debilitating exacerbations. I hope that your doctor gets it all worked out for you...there is nothing worse than not knowing something when it comes to your dx. xoxo :)

I was informed by phone...grin by the ms clinic neuro that i was definately MS in november 06 after reading my past MRI's from the epilepsy department.. then another MRI was ordered from the MS clinic.. had that in March 07... at that time i was told that i was almost through relapse remitting and well into progressive...
upon calling him about a month ago to question why no crab therapy,,, yep i was courious... i was told that i am labelled progressive...
so im guessing i slept through the first part...grin...
here's hoping the next stage goes just as easy as the first...lol

Was diagnosed in October of 06. Found out in November that my neurologist thinks I have RRMS. I recall him saying that time would tell, but he was pretty sure that I had RR. I haven't had any exacerbations since I was first diagnosed (that I know of anyway) and my last MRI showed no new lesions. So I am hoping that the Avonex will keep me in RR for a very long time.

Hi,
Hope all of this helps from everyone. I was just dx'd with possible MS in May07. I had 1 lesion on the right side, but am currently waiting for a result on my latest MRI of the c-spine. I have refused any meds for now. One specialist thinks I should go to Vanderbilt to a doctor who specializes in the immune system. On types of MS I am lost for now. I will be praying for you. Be Blessed Kathy

Back in mid-August of 2001 I woke up one morning and couldn't see my mirror at the end of my bed. Thinking my eyes were just sleepy I got up and washed my face. Upon returning to my room I looked again. The blurriness didn't clear. I told my parents and they said I was imagining things. I listened to them. Three weeks later I woke up and my entire right leg was numb. I again told my mom and made her take me to a doctor. This doctor told me that nothing was wrong with me even though my vision was 20/300. I kept ignoring it until Halloween of that year. I went to work and my boss told me to read the screen. When I couldn't, he called my mom and made her take me to the ER. After 11 hours of waiting in the ER they gave me an MRI which revealed six lesions on my brain. I've been to hell and back in the past 6 years but I am doing as well as I can. I have Relapsing/Remitting MS.

Watching the progression by relapses and through MRIs. The more progression and how the body doe / does not recover can distinguish which type of MS you have.

They check legions through MRIs and on occassion through spinal fluid.

I was dx'd with MS in November of 2000.
I had a major flare-up in 2005.
2 very small flare ups in 2006.
I have 13 legions in the brain including one on the brain stem.
I am dx'd with relapsing-remitting MS.

Thank you for your replies. My neuro thinks it is RRMS, but won't label it. I am going to see an MS specialist in January, and will have another MRI in December. I was told that there is the MRI with and without contrast - and you can't really tell how long you have had MS from it, that it will only show grey matter from past lesions and new active ones will be brighter with the contrast. My liver enzyme was a bit elevated at 38 but he said not to worry, just go back for more blood work in the next month and continue to monitor.

My neuro said it if you get better in between, it is rr. He also said that only time determines whether you will have progressive or not. He said that he has several patients that have been post diagnosis for a long time and are still rr.He told me that staying positive helps immensely.:)

I was dx in Nov 06. Only had one lesion on my c-spine. Told at that time it would take about a year to figure out what type. In Feb 06 I was told that I had primary progressive. I have a friend who was dx'd with MS a couple of years ago. He was just told what type he has.
Best of luck to you..

I was diagnosed May 30th of last month. It has been a busy month. If I was told what type, I don't remember. From everything that I have read, I believe it is RR. I just started taking the injections 2 weeks ago. I can't believe how many people have this disease.

First episode in 1960, age 12. No one could figure out what was going on. &quot;It is all in your head&quot; docs said.

Before knee surgery I was joking around with docs &amp; told them I wanted my face to feel no pain when i woke up. They thought I had a brain tumor. Three days later I had neuro appt.

In my opinion I was SPMS at that time in 1992 but insurance would only cover meds for RRMS. So that is what I had on paper. I never regained full use of any loss. Now it is official, as of 2003, I am SPMS.

Hi all! This is for those of you that have or have had the same neurologist for 4 years or more. I have been with mine now since 2009. He is one of the best movement disorder secialists in the midwest. I know he is extremely busy on the lecture circuit now and in fact not taking new patients there is a huge waiting list for him. BUT.... I feel like my visits are not what they use to be. He...

theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??

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